The government’s recent Benefit Cuts aimed in their entirety at those [of us] worse off in the UK are despicably unfair and absolutely in-line with the Tory thinking of the 1980’s under the evil empire known as the Thatcher Years. We live in a time when even the police are warning the coalition, or “Cruelition” as I call them – as it seems far more apt, that these cuts, cuts which they themselves also face, are dangerous because the men and women in the higher ranks of the police force today, are the same people as those who were on the front line when the riots of 1982 and 1986 and later when the Poll Tax riots kicked off, are well aware that we, poor people will NOT starve without a fight and they clearly expect trouble as the cuts trickle down to those most vulnerable in the inner cities. And this will begin to happen very soon. [I began writing this on 9/10/10 – before the Student Riots]

Although it is totally understandable that they have lowered the limit of Housing Benefit because it has been the cause so many awful headlines in the press for years now – with people getting ridiculous awards choosing to abuse the system by living in veritable “mansions” – which, despite being only a minimal percentage of all claimants has, for years, made a mockery of what average people claiming it – and in dire need of it – represent.

Add to that the total scrapping of Income Support which has been replaced by the new ESA benefit, which can only be described as a mine field. With extremely complicated and multi-hurdled obstacles built into it to make it very difficult for sick and lesser educated people to receive. We can expect to see ESA cause the poor to become even poorer and the vulnerable more vulnerable than at any time since the war! The police have got good reason to show concern when they say that cuts that they face will be dangerous because the likelihood of civil unrest is going to increase.

Of course the level of civil unrest is set to rise!

The Tories seem hell bent on getting the work force into the work place. But where are the jobs? And what about the people who are genuinely unable to work?

My doctor had to write a letter, as did a Benefits Advisor from the Terrence Higgins Trust and my partner’s employer to prove that we were £300 short EVERY MONTH without having a penny to spend on anything other than what the bills threw up. Recently I was awarded a Discretionary Housing Payment to help us out of £25 per week, and to the Benefit Officer’s credit, a letter saying she wish it could have been more! Also enclosed was a 7 page letter from the Brighton and Hove Council to explain some changes to what I will receive from now on. But it is so utterly confusing that I have no idea how much better off we will be until a fortnight today when the first payment hits my account, if – dare I say – I’ll be better off at all. [that day has now come and gone and we are still in a right mess!]

Are these government ministers so naive that they think that they will destroy our will to live? They certainly seem to be. Since announcing the “Cuts” the media has been full of inconclusive and/or mixed messages which are all pointing towards a recession and the job market drying up along with the help from the State so many people need. “They cannot cut benefits to people who are unable to work”, said a friend of mine this week. “They can and they have done, and they have not finished yet. They are simply ‘warming up’!” I told him.

Disability Living Allowance is not supposed to be ‘means tested’, it is meant to cover the cost of things that illness forces us to spend a little extra money on. But for the past 3 and a half months my own DLA has been needed to cover the shortfall in the rent! And with no other income except my partner’s part time wage, we have not spent a penny on any non-essential items since June. Her parents came to England for her birthday in September and she was, naturally, delighted that they came. But I have never felt so embarrassed in my life, because I was unable to take them for a beer – let alone buy them a meal!

A University in Scotland published a set of financial chops and changes which would work – and do so without the need for any unrest at all. But they involved looking after people unable to work as well. Which, quite clearly, is something the Tories have no interest in. Their policy seems crystal clear.

Two options: Work or Die.

Is that ‘over the top’ on my part? I would have thought so a few months ago but after a week of watching a trail of Tories and Lib-Dems defending these “drastic measures” on TV (mainly on The Daily Politics Show) hammering home the plans ahead and what we can expect in an announcement to be made in October, we had better fasten our belts and start down sizing our stomachs now. Because what lies in wait is simply an out and out assault on those unable to defend themselves and those of us who, in my case, would have to get up at 3 a.m. were I to have a chance of getting to a job that doesn’t exist by 9 a.m.

The former Tory leader and ex-soldier, Ian Duncan-Smith, well known in the nation as ‘In Deep S***’, during his tenure as leader of the Neo-Fascist Party appeared on Question Time a few months ago in Edinburgh, if memory serves, and a young woman who lives in a Council flat on benefits asked him “How she was meant to move forward when not only her income was to be slashed but her right to the apartment – a single bed, small flat on a Council Estate on the outskirts of Edinburgh was to look at her with disdain as she wept!

Austerity measures? No. Survival of the fittest – Yes!

Bring on the summer and the Cuts will have been in place for a few months – then as the title says, I Predict (a lot of) Riots!

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This one will take me ages to finish but it is a subject that needs to be tackled. It is early hours of Friday July 31st and the benefit trap has to be among the worst forms of living.

Man! It sucks!

From leaving school with no qualifications in 1982 until I was diagnosed in March 1994, I was never out of work. Even in the recession of the early 80’s – another one that the Tories gave us.

Since moving from London to a quieter town, (June 2010) I have had my income support stopped. So, as DLA (Disability Living Allowance) is not meant to be Means Tested, I get nothing! My partner works part time for a dedicated and active – not to mention extremely motivated charity – offering respite to carers AND watching my back, she’s a LEGEND!

This one is going to be difficult. But I won’t edit. I will just add to it – as and when I feel there’s something to be said!

She gets about 15 quid a week more than the system believes any couple needs to live on (their number being 140 quid a week). We just moved and the different DWP offices were giving me contradictory advice. The office in Ashton-in-Makerfield saying I merely had to tell my new “Pay-master” my change of address – whilst the local office insisted on me filling out a fresh claim. It was frustrating and confusing and resulted in me having to fill out a both forms A1 and A2 (change of address being an A2 which I was sent secondly) and the New Claim form – an A1 – which did not ask for much of the information I had to dig deep to find whilst filling the first one out.

So, having filled out both in June 2010, I waited. I had based all of our out-goings on what we had coming in on the numbers from London. We would, I thought, be absolutely fine.

How wrong I was. We are £750 per month worse off with my partner about to be cut down to 16 hours from 25 p/w because of cuts. Although, were she to continue in her role when we were in London, she would be worse off anyway because of the cost of commuting. We are actually being forced to separate now. She is tired of the government expecting her to work for free when what she does is (in her and the the eyes of many) very important. She helps people!

I am now feeling at an all time low because there is NO MONEY for anything at all! All of a sudden, I find myself depending on her to get a better job and on a family member to bail us out with a 295 quid shortfall between what (locally) we are entitled to on Housing Benefit and the actual cost. I can not remember ever feeling this low for one simple reason… I never have!

The medication I take daily means the virus is at bay. But the effects of the treatment mean I am feeling lousy as hell all the time. Myalgia has got my left leg. Don’t ask me what ‘Myalgia’ is… all I know is that it s a side effect of the COMBINTION THERAPY.

The effects being that the nerves in my left leg and more so in my left foot, causes a numbness ans cramps in my calf muscle which are so painful that they leave me in a ‘cold sweat’….

I had promised to publish a second post by tonight but my foot won’t calm down, so I’ll post this (as is) and I will get back to it asap…

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This idea, to do a blog about the day-to-day effects of living with, both, HIV and the treatment needed to keep the virus at bay, was thought up by my fiancee and also suggested by other friends and, of course, my big brother – who all feel that ‘were I to keep a diary of some sort, it would be a useful weapon in the War Against the virus’. A war which is far from being won.

So many people, of all ages, are still incredibly uninformed about such a life threatening illness which has been around for over 30 years! But most frighteningly [in my opinion] is that young people now think the AIDS/HIV ‘threat‘ has passed. Well, if they think it has, it has only passed their minds and has certainly not gone away! On the contrary, it continues to grow and spread across the UK and all age groups – some more than others – of course – but it is still on the rise in the UK.

I take the ART (antiretroviral) combination therapy and have done for over a decade on and off. What people fail to realise is that the virus is a proactive opponent. The “Combo” (ART treatment) is only capable of doing so much – it is NOT A CURE! Nor is it a question of taking a hand full of pills and getting on with life as before. Not for me and not for many I know, and have known, since I was diagnosed in March 1994.

I am housebound for the first few hours of every day because the damage to my intestinal process has been total. I wake up in pain and will have diarrhoea until I am ’empty’ from whatever I ate the previous day. This involves many visits to the loo and can take up to 5 or 6 hours on a bad day.

A “BAD. day” is a total ‘write off’.

A BAD day is a ‘Bad AIDS Day’ and I’ll write about one the next time I have one which – as you will see – is not a rare occurrence. For now I just want to explain how my “every day” life is affected by the virus. You might find it a lot more shocking than you may have previously thought. Perhaps you have never given HIV/AIDS a second thought. That is something I would really would like to change.

In my case I wake up with pain in my stomach which I can hide after years of practise. I just keep quiet and drink as much coffee as I can to quicken the process. The pain, like the time it takes to empty my bowel, varies from day to day. But there are no days off. Ever…….

So here is a typical morning in my life:

I wake up with pain in my stomach and often an urgent need to use the toilet. If I have had a “Night Sweat” (approximately between 4 and 8 days a month) I also feel like I haven’t slept. A night sweat is like a battle between the immune system and the invading virus which occurs whilst one is asleep. In my case, leaving me feeling like I haven’t had any good restful sleep just been still while my body – if not my mind – has been working hard during the night. It’s like a hang-over, I guess. A night sweat will leave me feeling run down and tired all day and require an early night the day after I’ve had one.

So, it’s between 0730 and 0830 and I have slept without a ‘sweat’, let’s say, for 7 or 8 hours. But those hours are often disturbed by restlessness due the effects of Myalgia, a side effect of the powerful ART drugs, which causes cramps and muscle pain in the legs. And can result in having to get out of bed and stretch my legs or stretch the cramp out of one of them. I try to take deep breaths once back in bed so as not to tense up and need to repeat the process. It’s a real pain! It makes planning for tomorrow nigh on impossible and I can no longer make an appointment and be sure to get to it until after 1400 hours. That’s a lot of lost hours!

At 1000 every day I take the antiretroviral therapy.

So, I am awake and sitting upright to let the force of gravity play its part in the emptying of my bowels. As a direct result of the “Morning Syndrome” I tend to eat far less than I should because food is now seen as a balancing act. The more I eat today, the longer I’ll suffer tomorrow. I try to eat two meals (a meal and a snack) before 1700 every day to give the food the maximum time possible to go through my system. Certain foods are a treat and two fingered salute to tell the virus I will not be a slave to it. Pizza, fried foods or even too much bread in a single day can be enough to cause the following morning to be ultra painful and lengthy.

I cannot take the pills for my guts to stop me going to the toilet and block the pain in equal measure – huge doses of Codeine Phosphate – until I am ’empty’. After plenty of coffee and remaining upright, my guts will eventually let go. Then the flood gates open and some mornings I will be sitting on the throne and vomiting into a bucket at the same time. The sheer aggression of the effect on my abdomen when this occurs will cause abdominal spasms. And they hurt. If the pain makes me sweat cold, I will take up to 40 mg of Diazepam to calm the muscles down – but the real help comes from the Codeine Phosphate. And I cannot take that until I am empty. It feels like a vicious circle and I know it will happen again to a worse or lesser degree the following day. It’s not going to stop. And, no, I’m not being pessimistic, I am paying attention to what my HIV Specialist says.

Now then, I have been awake for 4.5-5.5 hours let’s say. The amounts I am passing are even more liquid than the sloppy ‘norm’. I am almost empty. I will take 210-270 mg of Codeine Phosphate and drink some water before waiting for the drug to ‘kick in’ and offer some relief. This relief comes in the form of feeling no more pain and also feeling that I am now able to go outside which I cannot risk until I am ‘blocked’.

By the time most healthy, working people are having – or have had their lunch – I may be ready to face the day. The feeling left over from the painful morning means it will be another 1.5/2 hours before I eat a snack. As I write it is 15:20 and I have only had my snack less than an hour ago. A wrap with salad, ham and soft cheese.

So, half the day has passed and I am ready to begin mine. The way forward every day is to not plan too much and set myself small, attainable goals so that I don’t feel completely useless.

That’s how my average day begins. I shall continue with this blog to try and get across a simple message.

“The HIV/AIDS virus may well be treatable now – but it is not as simple to live with as so many people think!”